Narcolepsy Support Group
A sleep disorder (somnipathy) is a disorder in the sleep patterns of a person or animal. Some sleep disorders can interfere with mental and emotional function. If you are having trouble falling asleep or having some other kind of sleep disturbance, this group is for you.
I was always a very light sleeper even as a young child. So I was just a light sleeper. I had heard of Narcolepsy and what I had heard is that people would randomly fall asleep. It sounded strange and looked like you fainted.
My doctor thought I was depressed. I thought I was not but I tried antidepressants and nothing changed. She agreed, not depressed.
She checked my antibodies and told me I had Hashimoto's. My number was 125. It should be 0 and anything else is Hashimoto's. It can go up or down but will not go to 0. Okay, give me meds so I will feel better. But I just got increase after increase and not feeling better. Then my body stopped processing everything correctly. Vit D was low, calcium was not absorbed but rejected, etc. etc. I could not figure out why all of a sudden my body was not handling anything correctly. I developed Osteopenia and then Osteoporosis in my spine. All of this and in early 50's.
My fatigue was awful. I was working part-time and sleeping more than I was awake every day for years. I needed to work full-time but was terrified that I would not be able to do it. Then the thyroid medications started to work so I could work until 4:30 and nap at 5 until someone woke me up to eat. I would eat a little and go back to bed. If left alone I would just sleep, skip eating and still gain weight so why not just sleep? I chose sleep over just about anything else!
I gained 34 pounds while eating less calories that what is required to maintain my weight. Thyroid levels finally improved and lost about 15 pounds then nothing.
My Endocrinologist said he thought there was something else at play. He suggested a sleep study. I didn't want to do it. --I'll never sleep with all the wires attached. But, I relented and called a friend who works at a sleep lab & told her I wanted to make an appointment.
The sleep doctor said based on my "light sleep" that he thought the study would be helpful. --I woke up 75 times in 6 hours. (I thought it was 4 times.) He said I was borderline Narcoleptic. No way! I've never randomly fallen asleep. He says there are various levels. But, ok Borderline? No I did not have that! I said it's just my thyroid and when it is better I will not have fatigue.
Sleep doctor says if I will try Xyrem it will help me if I have Narcolepsy and do nothing if I don't. So I got approved and then chickened out. Just need to give my thyroid more time. Every day I was obsessed with napping or when I could take my next nap.
So a year and half later, feeling desperate: Started approval process again, was approved. Started Xyrem July 2. Slept only about 5 hours but a deep sleep. It's short acting and you have to start low and work your way up to full dose. You take it at bedtime then after at least 2 1/2 hours you wake up on your own and take second dose. When the 2nd dose wore off my eyes popped open and I was awake. No brain fog.
I have not had even 1 nap since July 2! Wow! Actually doing something and not napping.--not even thinking of a nap while I had been obsessed by it before.
I've been at the full dose for a week so I'm still adjusting to it. But I feel so much better.
Everything was off from not getting restorative sleep. This week my labs were better. Everything! was better except my thyroid --my thyroid medicine is now too much. I have to reduce the Synthroid because my body is now working better. Since July 2 I've been losing weight. About a pound or two a day recently. Of 34 gained I'm down 21 now! My next appointment in 2 months will be complete blood work. I'm sure everything I'm taking will have to be reduced! Also, my eye exam last week showed my eyes improved!
I feel so much more like my old self! I should have treated the sleep problem first and everything else would have fallen into place or possibly not have been so far off to begin with. Hashimoto's was always there but manageable but stress threw everything off. By not getting restorative sleep I felt like I had a hangover every morning when I had not been drinking.
My advice now is if your doctor thinks you have a sleep disorder LISTEN, have a sleep study and do something about it. I had no idea that being a "light sleeper" would cause such havoc! Also, not all doctors can prescribe Xyrem and it is very costly so you need insurance, however, they have programs for people who don't have coverage so that they can get it. I can't believe all of my problems were Narcolepsy!
My doctor thought I was depressed. I thought I was not but I tried antidepressants and nothing changed. She agreed, not depressed.
She checked my antibodies and told me I had Hashimoto's. My number was 125. It should be 0 and anything else is Hashimoto's. It can go up or down but will not go to 0. Okay, give me meds so I will feel better. But I just got increase after increase and not feeling better. Then my body stopped processing everything correctly. Vit D was low, calcium was not absorbed but rejected, etc. etc. I could not figure out why all of a sudden my body was not handling anything correctly. I developed Osteopenia and then Osteoporosis in my spine. All of this and in early 50's.
My fatigue was awful. I was working part-time and sleeping more than I was awake every day for years. I needed to work full-time but was terrified that I would not be able to do it. Then the thyroid medications started to work so I could work until 4:30 and nap at 5 until someone woke me up to eat. I would eat a little and go back to bed. If left alone I would just sleep, skip eating and still gain weight so why not just sleep? I chose sleep over just about anything else!
I gained 34 pounds while eating less calories that what is required to maintain my weight. Thyroid levels finally improved and lost about 15 pounds then nothing.
My Endocrinologist said he thought there was something else at play. He suggested a sleep study. I didn't want to do it. --I'll never sleep with all the wires attached. But, I relented and called a friend who works at a sleep lab & told her I wanted to make an appointment.
The sleep doctor said based on my "light sleep" that he thought the study would be helpful. --I woke up 75 times in 6 hours. (I thought it was 4 times.) He said I was borderline Narcoleptic. No way! I've never randomly fallen asleep. He says there are various levels. But, ok Borderline? No I did not have that! I said it's just my thyroid and when it is better I will not have fatigue.
Sleep doctor says if I will try Xyrem it will help me if I have Narcolepsy and do nothing if I don't. So I got approved and then chickened out. Just need to give my thyroid more time. Every day I was obsessed with napping or when I could take my next nap.
So a year and half later, feeling desperate: Started approval process again, was approved. Started Xyrem July 2. Slept only about 5 hours but a deep sleep. It's short acting and you have to start low and work your way up to full dose. You take it at bedtime then after at least 2 1/2 hours you wake up on your own and take second dose. When the 2nd dose wore off my eyes popped open and I was awake. No brain fog.
I have not had even 1 nap since July 2! Wow! Actually doing something and not napping.--not even thinking of a nap while I had been obsessed by it before.
I've been at the full dose for a week so I'm still adjusting to it. But I feel so much better.
Everything was off from not getting restorative sleep. This week my labs were better. Everything! was better except my thyroid --my thyroid medicine is now too much. I have to reduce the Synthroid because my body is now working better. Since July 2 I've been losing weight. About a pound or two a day recently. Of 34 gained I'm down 21 now! My next appointment in 2 months will be complete blood work. I'm sure everything I'm taking will have to be reduced! Also, my eye exam last week showed my eyes improved!
I feel so much more like my old self! I should have treated the sleep problem first and everything else would have fallen into place or possibly not have been so far off to begin with. Hashimoto's was always there but manageable but stress threw everything off. By not getting restorative sleep I felt like I had a hangover every morning when I had not been drinking.
My advice now is if your doctor thinks you have a sleep disorder LISTEN, have a sleep study and do something about it. I had no idea that being a "light sleeper" would cause such havoc! Also, not all doctors can prescribe Xyrem and it is very costly so you need insurance, however, they have programs for people who don't have coverage so that they can get it. I can't believe all of my problems were Narcolepsy!
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